So here I am, starting to feel human again, loving my hormones, and life over all taking on a nice mellow pattern. And then....my mom has been diagnosed with intestinal cancer. Seriously, how the fuck does this shit happen twice in a year in one family!?!? I'm pretty sure the statistical odds of it happening are ridiculously small!
Right now she's still in the diagnosing phase, so we don't really know how bad it is, but the doctors are already talking about it having metasticized. I think what pisses me off the most about all of this is that she's been sick for the last few years, and they've done all kinds of tests, blood work, specialists, even a frickin' bone marrow biopsy (I was seriously ready to start kicking ass and taking names when I saw how awful she looked after that!). So all of that....and none of the specialists, doctors, etc. thought, "hey, let's check her GI tract." WTF!?!? You check for a brain tumor, but not the stomach!?!?!? GAH!!!
It all started when she was diagnosed with celiac disease a few weeks ago. We were very excited because we thought FINALLY there's an answer to how sick she's been. A few diet changes, a little time and poof she'd be off the transfusions and back to her old self. But noooooo there has to be a goddamned 3"x5" tumor in her gut that's going to kill her. We already know it's an adenocarcinoma, which is the scary aggressive cancer, but the question now is where did it come from and is it anywhere else. FUCK!!!
Part of me is trying desperately to hold on to a zen calm (tripling my st johns wort intake helps), but just like with my own cancer, there is a part of me that is stomping my feet and shaking my fists at the heavens demanding to know why the fuck God would do this to me and my family again! Seriously. This is some fucked up shit. I just don't know what I'll do if she dies. I'm not ready for this. All I keep thinking about is that I'll be an orphan. Yes, I know I have my sisters and my niece, but she's my marmie god damn it! She taught me how to walk and talk (which I'm sure there's been more than a few times she regretted that one!) She sang me my first song and gave me a love of music. She taught me to read, to laugh and love. She's the only person in the world who put up with my bullshit, told me I was full of it, and still wanted to play tickle wars at the end of the day. With all the ups and downs of my life, mamma has been the one person to love me unconditionally, been there to dry my tears and the one shoving my fat ass back on the horse when all I wanted to crawl into a hole. She held my hand through my cancer, came with me to my appointments, and helped me to face the realities of my treatment. She cooked for me, called me every day, and gave me the courage to heal and move on. I can't face the reality that these may be the last holidays we have together.
I don't know what I"ll do without her.
Sunday, November 13, 2011
Monday, August 29, 2011
Thoughts on Motherhood
Most recently, the grotesque head of barrenness has been rearing. I'm well past the breaking down at restaurants, or stifling urges to indefinitely "borrow" my friend's babies. But the desire to be a mother is, at times, overwhelming. I've accepted that the experience of pregnancy and childbirth aren't meant to be. I know in my heart that somewhere out in the world is a little person who needs a mother as much as I need a child, but the hurdles to overcome are staggering at times.
I often ask myself, why do I want a child so badly? It's a crazy responsibility, and it's not like I'm married, or rich or anything like that. I don't hold a secret fetish for changing diapers, or being vomited on. Let's face it, they're germ-vectors, spewing forth the disease and contagion of the world. A good friend of mine once told me that she hadn't had a good nights sleep since the day before she gave birth. Anyone who has seen me low on sleep knows that to want to voluntarily consign myself to chronic sleeplessness is a sure sign of mental illness. Kids are sticky, they can embarrass you, they argue, they're all kinds of expensive, and don't get me started on merely just keeping up with the never-ending energy the little buggers seem to have. The fear of creepy-crawlers lurking behind bushes, or crazy drivers running red lights at the cross-walk is enough to make anyone with an ounce of sense give pause.
So why DO I want a child?
I want to be there to see the first smile. I want to soothe a fever and kiss boo-boo'd knees. I want to teach little Suzie how to ride her first bike. I want to show little Justin how to hold his fingers in the right position for the piano. I want to do back-to-school shopping and go to parent-teacher conferences. I want to lay in bed and teach Janie little hand games like my mother did. I want to see little Davie grow up to be a proper gentleman (I don't care what day and age it is, chivalry NEVER goes out of style!) I want to make lopsided birthday cakes with freakishly blue frosting (yes, Sophia, I remember...) I want to be sopping wet at bath time, and sing lullibies after reading Goodnight, Moon. I want to see the lightbulb of understanding as we try to decipher the latest math homework. I want to pass on my love of music and theater, and be there for all of the firsts in a child's life. I want to see my mom holding and loving my child, as only a proper Nanna can. I want to decorate the house for Christmas and share the child-like joy of the annual picture with Santa at Nordstrom.
In short, despite the plethora of drawbacks, I want to be a mother....and cancer has stolen that from me, or at the very least made it extremely difficult for these experiences to ever be mine. Fuck you cancer!
The post-cancer "halcyon" daze...err, days
Ok, I know in the grand scheme of all the blessings I've been given recently, I really don't have a right to complain. I seem to talk to a lot of women at work having cancer lately who are in a lot worse shape than I am. Even at the Crisis Line, I seem to be attracting all the cancer-related calls. Not long ago I had a call from a woman with a stage 3 cancer, and she expressed the same anger, hurt, fear that I remember feeling, and to some extent still feel. What made this call unique to me, was that she expressed anger at women who had lower stages of cancer than she did. She railed at the unfairness of those of us who were "lucky" enough to only have stage 1 or 2 cancer. She mourned the loss of her hair, and felt separate from the rest of the world. I felt and often still feel that same separateness. I know everyone around me empathizes, but unless you've experienced the trauma of a terminal illness (or in my case near-terminal), there's an unspoken understanding that you just can't know. I suppose the closest I could describe is for you to imagine you're the only human on a completely alien planet. You have a settled life, with alien friends and people around you. Now imagine, even with this life, there is a part of you that is, and always will be different. Then imagine the connectedness you feel when you happen to bump into another human on this alien world. Without using any words, there is an understanding that the aliens, no matter how thoughtful or understanding, can't quite grasp. That's what it feels like to talk with other women who have cancer. We don't need to use words to express ourselves. We just....know.
Saturday, August 20, 2011
Changes....
Yes, I am officially the worst blogger in the world. I can't believe it's been 2 months since I last posted! DOH!
So let's get all up to speed and stuff! Let's start with the hormones. Yes, I know I've talked about it before, but let's do a little recap, shall we?
My oncologist gave me an rx for premarin. As some of you know, this is a common estrogen replacement, which is short for PREgnant MAre uRINe. Yes. That's right folks. Horse piss. But not just ANY horse piss. No, PREGNANT horse piss. I'm sure you can imagine that my first instinct is to avoid contact with horse piss (knocked up or otherwise). Of course, I had to do my google-ing and research on it, and ethically I just couldn't bring myself to do it. The way the medication is made is by impregnating the mares as often as possible. Then, for the first 6 months of gestation, they're held in collection stalls, with limited movement/mobility with urine bags collecting all of the hormone filled yellow ambrosia. Then, just before they're about to foal, they're put out to pasture, have the foals, and then knocked up again as quickly as possible. And what happens to the babies, you might ask? As you might not know, there is a veritable glut of horses on the market, and often times these foals end up going to slaughter. Great. Not only would I be swallowing distilled horse piss every day, but then I get to have visions of baby horses being murdered.
Needless to say, I don't want to go that route. The downside is that the way my pharmacy communicated with my doctor, he declined the switch and left me having to figure out why. I ended up having to go through my primary care doctor (gawd I love that man!), who also had trouble getting in touch w/ the oncologist, but in the end, he switched me over to the estradiol. And since then, I haven't looked back! We started on the lowest dose, which made a huge difference, although I was still having some breakthrough hot flashes and mood changes. But for the past week or two, I've been at the higher dose...and it's pure nirvana!! I've had maybe 2-3 hot flashes TOTAL, and even they were pretty mild (compared to what I was having before where I thought sure my head was going to explode!)
In other news, I had my first followup with the oncologist and I'm still in remission! YAY! I was SOOOO nervous to get checked (who looks forward to getting a pap!?!) and I was terrified he would find something. It's amazing how, after all these months, that even the slightest twinge puts me in freak out mode. For the most part though, on a day to day basis, I'm really feeling great and just enjoying and loving being alive and relatively healthy (ok, yeah, I know, I need to drop a few...and when I say "few", I really mean a LOT!) lol!
So let's get all up to speed and stuff! Let's start with the hormones. Yes, I know I've talked about it before, but let's do a little recap, shall we?
My oncologist gave me an rx for premarin. As some of you know, this is a common estrogen replacement, which is short for PREgnant MAre uRINe. Yes. That's right folks. Horse piss. But not just ANY horse piss. No, PREGNANT horse piss. I'm sure you can imagine that my first instinct is to avoid contact with horse piss (knocked up or otherwise). Of course, I had to do my google-ing and research on it, and ethically I just couldn't bring myself to do it. The way the medication is made is by impregnating the mares as often as possible. Then, for the first 6 months of gestation, they're held in collection stalls, with limited movement/mobility with urine bags collecting all of the hormone filled yellow ambrosia. Then, just before they're about to foal, they're put out to pasture, have the foals, and then knocked up again as quickly as possible. And what happens to the babies, you might ask? As you might not know, there is a veritable glut of horses on the market, and often times these foals end up going to slaughter. Great. Not only would I be swallowing distilled horse piss every day, but then I get to have visions of baby horses being murdered.
Needless to say, I don't want to go that route. The downside is that the way my pharmacy communicated with my doctor, he declined the switch and left me having to figure out why. I ended up having to go through my primary care doctor (gawd I love that man!), who also had trouble getting in touch w/ the oncologist, but in the end, he switched me over to the estradiol. And since then, I haven't looked back! We started on the lowest dose, which made a huge difference, although I was still having some breakthrough hot flashes and mood changes. But for the past week or two, I've been at the higher dose...and it's pure nirvana!! I've had maybe 2-3 hot flashes TOTAL, and even they were pretty mild (compared to what I was having before where I thought sure my head was going to explode!)
In other news, I had my first followup with the oncologist and I'm still in remission! YAY! I was SOOOO nervous to get checked (who looks forward to getting a pap!?!) and I was terrified he would find something. It's amazing how, after all these months, that even the slightest twinge puts me in freak out mode. For the most part though, on a day to day basis, I'm really feeling great and just enjoying and loving being alive and relatively healthy (ok, yeah, I know, I need to drop a few...and when I say "few", I really mean a LOT!) lol!
Tuesday, June 28, 2011
A little recap
5 months ago I was dying from cancer, and 4 months ago today I had surgery, and am now cancer free. I never thought life would take me on such a wild journey. I won't lie, as you all know, it's been an incredibly difficult time in my life, but I also feel like I have so much more clarity on a visceral level of the things that are really important to me, and the things that used to be important just hold no appeal.
I look at my scars, although minimal and long since well healed, and I am reminded of the grief, loss, and pain that I've been through. I've been on the hormones now for a couple of weeks, and oh what glories! It's been wonderful to feel like my old self again - no more hot flashes, night sweats, minimal mood swings (is it really a mood swing if someone is pissing you off?)
Often times at work I talk with people who are also battling cancer. Most recently I talked with a woman who had only recently had surgery for cancer (different kind than mine), and even though I was her coach, the call became more about two women sharing a common experience of having our lives saved by surgery, but still facing the realities of post-cancer life. She cried, I got choked up. It truly showed me that it's the relationships we have with one another as human beings that's the fundamental purpose for life. Whether it's through conversation, making music, or even just being present to witness, it's what makes life, life.
I look at my scars, although minimal and long since well healed, and I am reminded of the grief, loss, and pain that I've been through. I've been on the hormones now for a couple of weeks, and oh what glories! It's been wonderful to feel like my old self again - no more hot flashes, night sweats, minimal mood swings (is it really a mood swing if someone is pissing you off?)
Often times at work I talk with people who are also battling cancer. Most recently I talked with a woman who had only recently had surgery for cancer (different kind than mine), and even though I was her coach, the call became more about two women sharing a common experience of having our lives saved by surgery, but still facing the realities of post-cancer life. She cried, I got choked up. It truly showed me that it's the relationships we have with one another as human beings that's the fundamental purpose for life. Whether it's through conversation, making music, or even just being present to witness, it's what makes life, life.
Sunday, June 5, 2011
The fart heard round the room
So last night I stayed up ridiculously late and went back to read my old blog posts. Boy, it's amazing how far I've come in the last 4 months!! I also learned that I should not be allowed to blog while under the influences of narcotics. What I thought was one of my funnier writings had been saved as a partial story, and then a cut/paste/vicodin drift mess. So here's the true story of the Best. Fart. Ever.
Mid afternoon of my first day after surgery, my much beloved choir peeps came for a visit (you guys rock!). It was a GREAT break from the total blur and haze of what the previous 24 hours had been (I also had a visit from my friend Chris, who brought me GOBS of the most AMAZING chocolate! Yum yum!) Now, trapping 4 choir peeps and a Grace in a room for too long, and inevitably, the issue of taking a walk to explore is gonna come up, and hence my 2nd adventure out of bed. I called the nurse to get unplugged from my 463 machines and extending 572 wires. This walk was mostly uneventful, although we did get shushed by several nurses (Come on, we're choir folk. We don't do quiet.) The end of this walk, was much more eventful than the first.
One of the main reasons they want you to be walking is because it helps your body to start get things moving along. So, before crawling back into bed, the urge for my first potty visit came. Under normal circumstances, this shouldn't be a big deal, right? I didn't think so, until I realized the hospital's floor plan was purposefully designed to promote the highest level of embarrassment for patients who have visitors. First, they have two little rooms, well, booths really, one for the shower, and one for the toilet. Both are designed for either very petite asians, children, and/or little people. So imagine my less than petite body, still not able to stand fully upright, hauling an IV pole while keeping the back of my gown closed from giving the choir peeps a view they'll never forget, trying to maneuver, all while having to pee (damn those nurses and their fluid push!) I'll be honest, a porta potty is bigger. Now imagine the pressure of having your first pee in a porta potty with your friends about 4ft away, all listening and formulating humorous jokes in their music addled brains.
Mid afternoon of my first day after surgery, my much beloved choir peeps came for a visit (you guys rock!). It was a GREAT break from the total blur and haze of what the previous 24 hours had been (I also had a visit from my friend Chris, who brought me GOBS of the most AMAZING chocolate! Yum yum!) Now, trapping 4 choir peeps and a Grace in a room for too long, and inevitably, the issue of taking a walk to explore is gonna come up, and hence my 2nd adventure out of bed. I called the nurse to get unplugged from my 463 machines and extending 572 wires. This walk was mostly uneventful, although we did get shushed by several nurses (Come on, we're choir folk. We don't do quiet.) The end of this walk, was much more eventful than the first.
One of the main reasons they want you to be walking is because it helps your body to start get things moving along. So, before crawling back into bed, the urge for my first potty visit came. Under normal circumstances, this shouldn't be a big deal, right? I didn't think so, until I realized the hospital's floor plan was purposefully designed to promote the highest level of embarrassment for patients who have visitors. First, they have two little rooms, well, booths really, one for the shower, and one for the toilet. Both are designed for either very petite asians, children, and/or little people. So imagine my less than petite body, still not able to stand fully upright, hauling an IV pole while keeping the back of my gown closed from giving the choir peeps a view they'll never forget, trying to maneuver, all while having to pee (damn those nurses and their fluid push!) I'll be honest, a porta potty is bigger. Now imagine the pressure of having your first pee in a porta potty with your friends about 4ft away, all listening and formulating humorous jokes in their music addled brains.
The blessed event happened without incident, until I went to stand up and the most wonderous sound erupted from my nether cheeks. It was a veritable thunderclap that echoed grandly around the tiny booth of the toilet room, and judging by the guffaws coming from outside, said echo was also heard beyond my four tiny walls. Now, let me back up a bit, and explain a little more about the awesome force and power of this fart. GoLytely has a wonderful way of emptying the bowels, so that all that is left is air. Surgery and the subsequent food I ate lead to a tremendous build up of gas, which, up until that point had been held stagnant in my belly. Ironically, walking helps your body to not only get things moving with the kidneys, but it naturally pushes gas out. Great. Just great. I survived the embarrassment, and made my way back to bed, secretly thrilled to death to have some of that gas and pressure released. Fortunately, my beloved comrades have had the grace to not mention it again (because we all know I wouldn't be so generous! lol!)
As the day wore on, my continued discomfort with the gas was beginning to reach epic levels. The pressure was forcing my intestines to push on my freshly operated on ligaments & tendons, to the point of pain surpassing the ibuprofen, vicodin AND morphine. Yet, try as I might, nothing was happening, no matter how I shifted in the bed. I complained to the nurse, hoping for some gas-x or tums or something to settle things down. She grinned the most devilish and evil grin a human being can muster and said, the best way to do it is to get up and walk. Wonderful. So, in an effort to get things moving as quickly as possible (seriously folks, extreme gas post op is AWFUL! Worse than bad chili gas.), I was off to my 3rd walk. 10 minutes later of shuffling up and down the halls with my IV pole, I felt a change. A wonderful, powerful warning to my brain that if I don't get back to my room ASAP there's gonna be a problem, followed swiftly by fully body blush of embarrassment. I made it to my room, and, if possible, an even louder Zeus-like thundering erupted than earlier with my friends. I was bent over the bed and was powerless to do anything but allow my body to just let go.
Now, I'm sure at this point, you're wishing I'd stop giving details, but honest to god, you know you're secretly chuckling. Fart stories make you laugh. ADMIT IT! Now, if sound of said fart wasn't so prodigiously loud, the length and duration is what made it truly something to remember. Now, for those of you not in the know, human intestines are roughly 24.5 feet long. Imagine, dear reader, the sound of 24.5 feet of pent up gas being released through a relatively small sphincter. Exactly. That's how profound this fart was. I actually felt my stomach deflating from the pressure release like a balloon. Oh such glories! Such joy! Seriously, this felt better than sex. Better than Ben & Jerry's. Better than sex with Ben & Jerry's.
Monday, May 30, 2011
Oh Happy Day!!
This past week was initially a blessed relief of menopause symptoms, and other than one super grumpy day, was almost (dare I say it), even keeled! I know, right!??!! LOL!
The highlight of my week was my visit to the oncologist to talk about everything. Wonder of wonders, and holy of holies, he said I'm good to take hormone replacement! NO MORE HOT FLASHES!!!! NO MORE MOOD SWINGS!!!! GLORIOUS!!!!! FABULOUS!!! WONDROUS!!!!! Seriously, I'm on cloud nine!!
Apparently there's been three separate university studies that have shown that there's no increased risk of returning cancer. AND there's evidence it reduces overall risks of cancer, esp. colon cancer (which is the cancer most closely associated with uterine cancer). Oh, and for those who haven't taken psychobiology of women, estrogen increases your energy level and decreases your appetite. H-E-L-L-O!!!!!
So now the debate is which kind of hormones to use: synthetic plant based, or the horse urine one. Now, biologically speaking, the horse urine one is the closest to human estrogen. My major problem with it is how they get it. Basically, it comes from pregnant mares and I have a REALLY hard time with how they get it. The horses are impregnated every year, kept in a stall for the first part of the pregnancy, with collection bags, for 6 months, and then put out to pasture to foal and get pregnant again for 6 months. Oh, and often times, the foals are sent to slaughter. It just seems like such an awful existence. So I'm very torn between using the med that has the highest chance of working versus the awful guilt and picture little baby horses being killed. I talked with the head pharmacist guy, and he said the synthetic one works just as well, although the dosing tends to be a little higher. And it's a LOT cheaper. So I'm pretty sure I want to use the synthetic one, but the only problem is that when I brought the script for the horse med, the pharmacy called the doc to see if he would switch it, and he wouldn't. So now I'm waiting to hear back to find out why....FML.
So for a few more days anyways, I'll be slightly cranky, with a side of sweaty hot flashes. But soon....oh so gloriously soon my long held fantasy of an almost normal life will be realized!!!
The highlight of my week was my visit to the oncologist to talk about everything. Wonder of wonders, and holy of holies, he said I'm good to take hormone replacement! NO MORE HOT FLASHES!!!! NO MORE MOOD SWINGS!!!! GLORIOUS!!!!! FABULOUS!!! WONDROUS!!!!! Seriously, I'm on cloud nine!!
Apparently there's been three separate university studies that have shown that there's no increased risk of returning cancer. AND there's evidence it reduces overall risks of cancer, esp. colon cancer (which is the cancer most closely associated with uterine cancer). Oh, and for those who haven't taken psychobiology of women, estrogen increases your energy level and decreases your appetite. H-E-L-L-O!!!!!
So now the debate is which kind of hormones to use: synthetic plant based, or the horse urine one. Now, biologically speaking, the horse urine one is the closest to human estrogen. My major problem with it is how they get it. Basically, it comes from pregnant mares and I have a REALLY hard time with how they get it. The horses are impregnated every year, kept in a stall for the first part of the pregnancy, with collection bags, for 6 months, and then put out to pasture to foal and get pregnant again for 6 months. Oh, and often times, the foals are sent to slaughter. It just seems like such an awful existence. So I'm very torn between using the med that has the highest chance of working versus the awful guilt and picture little baby horses being killed. I talked with the head pharmacist guy, and he said the synthetic one works just as well, although the dosing tends to be a little higher. And it's a LOT cheaper. So I'm pretty sure I want to use the synthetic one, but the only problem is that when I brought the script for the horse med, the pharmacy called the doc to see if he would switch it, and he wouldn't. So now I'm waiting to hear back to find out why....FML.
So for a few more days anyways, I'll be slightly cranky, with a side of sweaty hot flashes. But soon....oh so gloriously soon my long held fantasy of an almost normal life will be realized!!!
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